About Hemophilia...

Hemophilia is a rare genetic bleeding disorder in which the blood does not clot normally. Persons with hemophilia are missing or have a low level of a protein needed for normal blood clotting. About 18,000 people in the United States are known to have hemophilia. Hemophilia usually only occurs in males, except for rare exceptions. A person with severe hemophilia means that they have less than one percent clotting factor in their system.

Friday, April 7, 2017

Hemophilia Awareness All Year Long

March is Hemophilia awareness month, which is great helping people focus on a still little known genetic condition that changes the world of so many people.  Yet why stop at March?  Ever since Dwight was born, Dana and I have made it our goal to educate people one by one wherever we met.  Today I am not traveling around the USA with my minister husband, who is now disabled, so my contacts are more limited.  Yet I still share info about hemophilia and my son with my book club and all the home health workers we come in touch with.  Why?  Because the more people are aware of hemophilia the more focus will be brought for research and the greater quality of life to those who have to deal with hemophilia on a daily basis.  Although there have be great strides since my father's day, there still is so much more that can be done.  Unfortunately, because hemophilia still remains a rare genetic condition there is a constant struggle for grant dollars and research- not to mention pressure needed on the few pharmaceutical companies that have held a tight control for so many years causing shortages and outrageous prices to open up the market place for the manufacturing of more factor my son and thousands of others depend on to survive and live a normal life.

The other month Dwight, Tigg (a blood brother, who also has severe hemophilia), and a neighbor fellow went camping overnight and then 4-wheeling the next day.  Even though there was delays getting all the 4-wheelers running- what Dwight is doing here in the above picture- they didn't give up and with their laid back personalities after years of waiting in hospital rooms, doctor offices, and clinics along with endless days of having to lie around due to internal bleeds, they finally took off for the woods. It was a beautiful day as they explored the old railroad track deep in the Big South Fork.

While some might pity these guys, who often travel in the slower lane of life due to circumstances beyond their control, instead of feeling sorry for themselves and sitting around doing nothing they are busy living their life to the fullest setting an example that the rest of us would be smart to follow.

1 comment:

  1. As a sign of gratitude for how my husband was saved from hemophilia, i decided to reach out to those still suffering from this.
    My husband suffered hemophilia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the herbal cure to hemophilia . I never imagined hemophilia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.hemophilia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.